Tuesday, 18 July 2017

In my
2013 blog post ‘What is dementia’ I focused on the symptoms of dementia,
noting the following amongst my very long list of ways in which a person can be
affected by dementia:

“An
increasing need for reassurance (someone who was previously independent
becoming clingy or losing confidence), or a need to be
constantly reminded about things”

Back
then, I wasn’t aware of the phrase ‘trailing’ or describing a person with
dementia as ‘following’ others around. I literally just thought of the need to
be close to someone you trust as a need for reassurance.However,
watching the recent BBC Documentary ‘Granddad, dementia and me’, the
phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with
vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need
to be constantly with Pam had, for Pam, got to a point where she needed some
time away from Tom.The film
throws up numerous issues which I will explore in my August D4Dementia blog,
but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's
wellbeing when they were happily reunited towards the end of the
documentary, is a really interesting one.From
the perspective of a spouse or family member, if you are used to your loved one
being fairly independent, the way in which dementia can leave a person without
the confidence to be on their own can be difficult to understand, adjust to or
successfully support. Many spouses or family members end up feeling suffocated
and like they haven’t got a minute to themselves. This was very strongly
portrayed in ‘Granddad, dementia and me’ which in the early part of the film
really made Tom look - to someone without a good understanding of dementia -
like he was a nightmare to live with.Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain
caused by his vascular dementia (the same type of dementia my dad had) weren’t
Tom’s fault (even with risk reduction, no one is guaranteed to not develop a
type of dementia). These changes were even more baffling for Tom than those
around him – unless you are a person living with dementia, you cannot possibly
understand exactly what it feels like to be a person who is.When
things are happening to us that we don’t understand, the
natural human tendency we have from birth is to gravitate towards someone who is familiar, who we
trust, find comfort with and love. We want to know that everything is ok. And
if we have an unmet need that we cannot articulate, the natural reaction
is to search for someone who might be able to interpret this, which is most
likely the person we are closest to in our life, usually our spouse if our parents are no longer around.In
parenting, this is a given. As mums and dads we accept and expect that our
young child will seek us out when they need us, particularly if they don’t have
the language to articulate their needs or the ability to meet them
independently. Indeed, clinginess in a young child is otherwise known as the child
seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.I
appreciate that in marriage this isn’t a given – you marry an independent adult and
expect them to remain that way. But there is another way of looking at the
reassurance a person with dementia needs from the person closest to them – You
are their ‘secure base’. It is a mark of how strong your bond is that you are
the person that your loved one needs to be closest to.I’m
not for one moment suggesting an adult with dementia is now a child – they
remain an adult regardless of their cognitive impairment. But the narrative
and attitudes we have towards happy and successful parenting, and the narrative
and attitudes we have towards supporting a person who is living with dementia,
are poles apart and children are definitely getting the better deal!That
is not to in any way undermine the huge efforts made by families around the
world in caring for their loved ones who are living with dementia. I was appalled
at the criticism of Pam and her family – yes, we can all spot mistakes
from the comfort of our sofa, but when you are living the experience it is very
different. What
I wish is that Tom, Pam and their family could have been shown receiving really
proactive support to ensure that they could give Tom what he needed. The film
showed that medicating Tom wasn’t the answer, and two periods as a
mental health inpatient (including sectioning – my views on sectioning are
here) didn’t help. So what is general good advice for
any family whose loved one wants to be with them 24/7:Occupation
and activity

One
of the major features of the first part of Tom's film is how little
he had to occupy himself with. He was never shown to have any responsibilities
or daily tasks, meaningful occupations, hobbies or activities that he enjoyed –
not a healthy situation for a person who’d been a high-achieving, hardworking
businessman.

That
is not to say that everyone who lives with dementia will feel motivated to do
things, my dad certainly went through a period when he refused to do anything
except watch TV and look at books, and many people with dementia develop
depression alongside their dementia which can also contribute to not wanting to
do anything, but presenting those opportunities and making them a consistent
part of every day life is vital.

Disabling
people when they still have capabilities is a disaster. Not realising the
person still has capabilities is a double disaster.

Do
things together

So,
you might think that ideal occupations and activities are ones that the person
does alone, but think again. The person may not know how to begin, let alone
successfully complete, a task. Doing things together not only means you being
able to guide the person, but it enables the person to model what you are doing
– it’s a subtle activity that is often wordless, and may happen without you
even realising it as the person watches and copies you. A simple but vital way to
boost the person’s independence without them having to acknowledge ways in
which they are struggling.

You
may well be tired of telling your loved one "You can do it", but dementia is a
very big voice in a person’s life that, essentially, is trying to hold them
back, making the person insecure, vulnerable and lacking in confidence. As the
most trusted person in your loved one’s life, you have the ability to stop that
juggernaut in its tracks (temporarily at least) by being a constant source of
support, confidence and reassurance. As the Bette Midler song goes:

Did you ever know that you're my
hero,

And everything I would like to be?

I can fly higher than an eagle,

For you are the wind beneath my
wings

Accept
the unsaid

Hard
and exhausting though the need for constant reassurance and company may be,
accepting three little words – that will most likely never be said out loud - can
be transformative for your resilience. "I need you" is what your loved one’s
quest for reassurance and confidence is really saying. Take it from someone who
was once that needed person, it may be hard at the time but it’s harder when
you are no longer needed.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.